10-year-old survivor lost twin brother to pancreatic cancer, now a PanCAN advocate

10-year-old survivor lost twin brother to pancreatic cancer, now a PanCAN advocate

Pancreatic cancer survivor Richard Novell, left, at PanCAN Advocacy Day in Washington, DC

Richard Novell, left, with other advocates at the PanCAN Advocacy Day in Washington, DC, to discuss with elected officials the need for increased federal funding for research. Richard represents the state of Wisconsin.

Richard Novell’s identical twin brother, Bernard, died of pancreatic cancer 20 years ago.

When Richard received the same diagnosis 10 years later, it was amazing. Today, Richard is a 10-year pancreatic cancer survivor. And he’s determined to do his part to make sure others don’t join the same “exclusive” club, he said – the one he’s a member of, but never wanted to be.

“I can’t tell you how passionate I am about eradicating this terrible disease,” said Richard.

There was no other pancreatic cancer in Richard and Bernard’s family. And despite having genetic tests done multiple times to help determine if he had an inherited gene that could lead to pancreatic cancer, it was only the third time he had tests that he learned he had a mutation in the CHEK2 gene, inherited from the paternal side of the family.

The normal function of CHEK2 is to produce a protein that acts as a tumor suppressor – decreasing the likelihood of cancer developing. When mutated, the risk of several types of cancer is increased, although CHEK2 mutations are very rare in families with pancreatic cancer.

10-year pancreatic cancer survivor Richard Novell of the Milwaukee area

Richard Novell enjoys raising funds to support pancreatic cancer research and pancreatic cancer patients and their families.

PanCAN strongly recommends that patients with pancreatic cancer speak with their doctor about obtaining genetic testing for inherited mutations to help determine if family members may be at risk and to help the patient take appropriate more informed treatment decisions.

The CHEK2 gene may indicate an increased risk of developing prostate cancer, and Richard was diagnosed with the condition just six months before he was diagnosed with pancreatic cancer. He was diagnosed with stage 3 pancreatic cancer in September 2012 after a CT scan when he had gallbladder surgery. The tumor was in the tail of his pancreas, so surgeons performed a tail resection.

“My spleen was totally engulfed in cancer, and I had cancer in nine of the 19 lymph nodes they removed,” he said.

Chemotherapy and radiotherapy followed. It was a tough battle – he lost 40 pounds and needed 26 blood transfusions in the process.

One day, three years into his battle with pancreatic cancer, Richard was watching television and saw a pancreatic cancer survivor sharing his story. The survivor lived in the Milwaukee area, as did Richard. He was so positive and upbeat, Richard said.

“I tracked him down and said, ‘You are amazing – thank you so much for sharing your story. “”

The gentleman encouraged Richard to get involved with the local volunteer branch of PanCAN and he did so, raising funds to support PanCAN’s mission – including research and free one-on-one support and assistance to patients and families.

“The more funding there is for research, the more deaths that can be prevented,” he said.

Join us on World Pancreatic Cancer Day, November 17, for our webinar
Research for Us All: A PanCAN Community Conversation.

He also attended PanCAN Advocacy Day in Washington, DC to advocate for increased federal funding for pancreatic cancer research. He remains friends with many people he has met through his involvement with PanCAN.

The stories he hears, and the one he is able to share with others – his own – resonate with Richard.

“Whether we realize it or not, we affect those around us with our every move,” he said. “The more we can shine a light on the positivity and goodness that there is in our humanity, the better off we will all be.”

Richard relies on his strong faith and attributes his longevity to a fantastic attitude, good doctors and the grace of God.

“The reason I’m still on this earth is either he has more work for me to do…or I’m a stubborn SOB,” he said. “I’ve spoken to so many pancreatic cancer patients and try to give them hope. We’ve all been dealt a bad deck of cards and all we can do is play the hand as best we can.

Richard, a semi-retired computer scientist, likes to stay busy – “I’m busier now, in retirement, than ever,” he said. He and his wife of 52 years have two sons. Every day, the couple meet in front of the TV to watch “Wheel of Fortune” together.

Then he starts moving again.

“I’ll-go,” he said. “I feel fantastic.”

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